Thinking About Diabetes With Every Bite
The following is an article that ran in the New York Times on 11/23/09. The writer (Catherine Price - pictured here) is a type I diabetic and she captures nearly perfectly what it’s like to live with type I. Very worth a a read! The link to the original article is just below.
http://well.blogs.nytimes.com/2009/11/23/thinking-about-diabetes-with-every-bite/
November 23, 2009, 9:54 AM
Thinking About Diabetes With Every Bite
When I look at food, I don’t see food. I see sugar — in the form of carbohydrates — plotted on a multidimensional graph with proteins and fat and serving sizes and sickness and exercise and times of day.
Catherine Price
I didn’t always do this. Before I received the diagnosis that I had Type 1 diabetes, I saw food as food, and ate it as such — simply, casually, with no real thought attached.
The winter of my senior year of college, after a bad cold and painful breakup, I began eating more — not to cope, but to feel full. I was hungry, always hungry. Hungry and thirsty and tired, piling my tray in the dining hall with pasta, cheese, dessert, getting up in the middle of the night to slurp water from my dorm’s bathroom faucet.
I gorged myself and yet my pants were looser, my arms thinner, my stomach flatter. One afternoon I threw it all up, convinced I had food poisoning. My stomach eventually settled, but my mind did not. The world swirled. I couldn’t stand without stumbling. On Feb. 17, 2001, I entered the hospital, and since that day, food has never been the same.
To live with Type 1 diabetes means to be aware, constantly aware, of insulin — a hormone produced in the pancreas that unlocks your cells so they can use the energy in your food, which circulates in your blood as glucose. A healthy person’s pancreas pumps out insulin in exact, perfect doses, masterfully managing the level of available glucose so that it never rises too high, which could lead to complications, or too low, which could kill you on the spot.
My pancreas, however, doesn’t make insulin. It can’t. For reasons no one can fully explain, my own immune system killed off the cells that produce it. That’s what Type 1 diabetes is — an autoimmune disease in which your body turns against itself. It’s frequently confused with the more prevalent form of diabetes, known as Type 2, but the diseases are not the same. Unlike Type 2, Type 1 diabetes can’t be prevented or managed with diet, exercise or oral medications. Instead, it requires artificial insulin — through injections, not pills — to stay alive. Before insulin was discovered in 1922, Type 1 diabetes was a terminal disease.
Today, artificial insulin means that a Type 1 diagnosis is not a death sentence. But living with diabetes takes much more than simply giving yourself shots. It requires constant, unwavering attention to your meals, lifestyle and medication — and even the most conscientious person with diabetes will never achieve the balance that a healthy pancreas effortlessly maintains. If I take too much insulin, my blood sugar will drop too low; my body will sweat and tremble; I will become anxious, irritable and confused. If I don’t quickly eat something to give my body the glucose it needs — or, worse, if it’s the middle of the night and I am too deeply asleep to notice the warnings — I could lapse into seizures and unconsciousness and never wake up.
It would be easier to keep my blood sugar a little too high, to coast comfortably above the turbulence of tight control. But doing so would mean ignoring the destruction caused by high sugar levels — slower than a seizure, but devastating nonetheless: the capillaries in my eyes bursting from too much glucose, the tiny vessels in my kidneys overwhelmed by sweetness, the nerves in my feet losing their ability to feel.
Instead I calculate constantly, measuring my food’s potential effect on my blood against my desire to eat it, trying to walk a Goldilocks tightrope where my sugar is not too low, but also not too high. My blood sugar’s reaction to food depends on far more than the food itself. If I exercise before or after eating, it is different. If it’s the morning, it is different. If I have my period, it is different. If I am tired or stressed or sick, it is different.
From the outside, diabetes is invisible. Look closer, though, and my fingertips are calloused where I prick them to test my blood sugar 10, 12 times a day. A bulge in my pocket reveals my insulin pump, a machine connected to me by a tube that, in giving me insulin, keeps me alive; scars from its insertion sites pepper my hips. My pump means fewer injections, but it has no brain — I still decide how much insulin to take. Instead, it is a literal tether, its plastic stint in my side a reminder, as I sleep with it, exercise with it, and go to dinner with it tucked in my bra, that I have a disease, that there is something wrong. Diabetes’s subtlety is both a blessing and a curse, saving me from stares and pity but keeping the difficulty of the disease — and its severity — hidden as well.
I hate it, diabetes — wish I could take a vacation from it, eat a slice of bread without calculating carbohydrates or have dinner with friends without fear. But I can’t. So instead I try to flip things around, to use the challenges of diabetes as an inspiration to live as fully as I would if I didn’t have it — if not more so.
One of the best decisions I ever made was to participate in a clinical study for a new experimental drug as soon as I learned my diagnosis; I encourage everyone to do the same. As my endocrinologist, himself a Type 1 diabetic, explained to me, “We need just about every single newly diagnosed person to get involved in a trial. It’s the only way things won’t be the same in five years.” You can find a clinical trial for Type 1 through the Juvenile Diabetes Research Foundation, theNational Institute of Diabetes and Digestive and Kidney Diseases, the Immune Tolerance Network orClinicalTrials.gov.
I have also started writing for a diabetes Web site called A Sweet Life in hopes that, by sharing my own experiences with Type 1, I can help other people feel less alone. But there is plenty about my life that has nothing to do with having Type 1, like co-authoring a cookbook and writing a parody travel guide. My most recent non-diabetic adventure was to join a no-audition hip hop dance group.
Living with Type 1 is an exercise in measurements and judgments and willpower and constant self-restraint. For me, the most difficult part is accepting that I will never be perfect; I will always have bad days and, perhaps worse, there is no way for me to “win.” Like everyone with Type 1 diabetes, I will have to keep at it — every day, every hour, until we finally figure out a cure.
The best I can do in the meantime is to control my disease without allowing it to control me, and to not let the autoimmune attack on my pancreas develop into an emotional attack on myself.
And, of course, to dream of a day when I can once again think of food as food — simple, enjoyable, with no strings attached.
Catherine Price is an Oakland, Calif., freelance writer whose work has appeared in “The Best American Science Writing 2009,” Popular Science and The New York Times. She is the author of “101 Places Not to See Before You Die,” to be published in 2010 by Harper Paperbacks.
JDRF Walk Awards
Tomorrow is the JDRF Walk Awards, it’s held again this year at the Philadelphia Phillies stadium. Arden will be receiving her third award for ‘Excellence in Fundraising’ this year and we are all very proud of her! A special thanks goes out to all of you for making her walks so successful!
There is a luncheon that is followed by the award ceremony and then we our taken on a tour of the stadium.
If you follow Arden on Twitter you may just get a picture or two tomorrow live from the awards.
http://twitter.com/ardensday
UPDATE: Pictures from the day are in our Scrapbook
504 Plan pt2
Part 2: Find your zen place
There are a few good examples of 504 plans online, I’ll link to them later (I’ll also make Arden’s available). But let’s not jump too far ahead.
The first thing to understand is that you will sound like a loon (to the school) when you begin to describe how you care for your child’s type I. It’s unavoidable, everyone except those who live with type I are likely to think that you’re an overbearing, overzealous loon. Of course you know that you’re not and I know you aren’t, but nothing short of living with type I can convey it’s complexity... can it?
Since you can’t ask the school to come live with you for a weekend, how do you get them up to speed? The answer is patiently and methodically. Your patience will be rewarded as the uneducated staffers begin to catch on. Don’t forget that these folks have the added burden of wanting and needing to appear in control and you are flooding them with a lot of unfamiliar, technical and jargon laden information. You may find a nurse with a ton of experience which is great! However, that could also lead to them wanting to do things their way for comfort’s sake. If you have a different care plan in mind you are going to have to communicate it, perhaps multiple times.
You have to resist the urge to acquiesce when faced with pressure. They know what they know, you know how to care for your child. Everyone is different and the schools tend to think of all type I children as the same. There is a definite coalescing period at the onset of this process. If you loose sight of the fact that this is an adjustment for everyone, you can and will fall quickly into a righteous anger. That anger may feel good but it won’t get you to the desired ending, which is a safe, healthy learning environment for your son or daughter. It will just get you to paying for a child advocacy attorney and years of uncomfortable daily interactions.
I did well keeping this in mind... Yes the 504 act provides for my child but that doesn’t mean that the school isn’t going to react in the way that people often do when presented with change, with resistance. I always tried to put myself in the “schools” shoes before I acted. Remember, every time you make a request, someone has to address it and your 504 is full of requests. It isn’t fun being asked to do more when you already feel like you do so much and the additions that you are proposing, are at their core, more things for someone to do. These request aren’t just more work, they are scary. Face it, it’s scary to be left in charge of our children. The reactions you are likely to encounter initially are emotional, understandable and not at all about you or your child... you must resist the urge to respond to them in kind or things will degrade fast. Keeping this balance without giving up your position is the crux of the entire exchange.
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The following are archived comments from this post. You can post new comments below.
504 Plan pt1
I believe enough time has past since we put Arden’s 504 plan in place that I can speak about the process here with an even temper. I’ll do my best to break the story up into digestible and topical bits.
Please keep in mind that Arden’s school is currently doing a wonderful job of caring for her. If at times during this blog within a blog (within a blog) it seems as if I think otherwise, I do not. That said, I will write honestly about my experiences so that the reader can learn what to expect when setting up a 504 plan. Our story ends well... not just well honestly, nearly perfectly. We have administrators that are willing to learn about type I, school nurses that are empathetic and caring and a wonderful health aide.
Even with good people like this to work with the road to bliss isn’t smooth.
Guest blogger on the Bennet Letter
Hello,
Senator Michael Bennet (D-CO) has written a letter to Senator Harry Reid (D-NV) urging him to bring a vote to congress on the public option under budget reconciliation rules. Without going into great detail, the public option gives everyone an option to buy health care through the government at a lower cost than they can now from private companies.
There are more then 3 million children with type I diabetes and over 40 new kids are diagnosed every day. The need for lower health care costs are clear now more than ever. The costs of caring for a child with type I diabetes for example, is astounding. Insulin and all the supplies needed to manage this horrible disease range between 3-4 thousand dollars per year, if the person has insurance. That does not include doctor and hospital visits or insulin pumps which can cost upwards of 5000 dollars.
As you can see the cost of managing type I is staggering for people with health care coverage but there are so many that can not afford proper or any insurance. Try to imagine that your child has type I and that you can’t afford to take them to see their doctor regularly. Imagine what it would be like if you weren’t able to buy the needed insulin and syringes for them let alone a pump that could better manage their blood sugar. A public option would give these people a chance. It would allow them to get the insurance so that they can get themselves and their children the care that they so desperately need.
My roommate, Ray and I were proactive today, not only did we sign the petition but we called our Senators and asked them add their name to the Bennet letter. I urge you all to do the same. Everyone deserves a chance to be healthy! Americans have a long and proud history of coming together when there is a need. After watching Arden live with type I for the last three years I can tell you, with no reserve that politics aside, I believe that a fellow citizen’s health should never be limited by finances. There is already so much dignity lost when you are sick, surely we can give some back.
Thank you for your time and attention,
Arden and Cole’s Uncle Brian
There are links to the Bennet Letter on our site here